I've become very familiar with something they call the five stages of grief lately. Normally this is applied to losing a loved one. In a way I am losing a person I love, this person is just who I always thought I would be.
I don't mean to sound so depressing, instead of a sad story think of this story as a coming of age story. It's a long story so I will give you the Cole's Notes version.
It started in 2006 with bad sciatic pain and later that year I had to learn a lot about two words called Ankylosing Spondylitis. I took this diagnosis and tried lots of prescription drugs which did nothing but teach me about the side effects of those drugs. I was fed up and tried my own thing, boycotting this diagnosis. I suffered flares followed by remissions. And the flares became fewer and fewer. Until these past few months. After a couple years with my chiropractor, he asked aloud in one session, "why are you not getting any better?" Then he uttered two words I had erased from existence for years: Ankylosing Spondylitis. On a promise to my wonderful chiropractor I went to my GP to investigate. I ended up back with the same specialist albeit in a different office than 6 years ago with the same diagnosis.
I felt sad to be back at this point but honestly having this diagnosis makes me feel relieved. To explain this I need to tell you more about AS.
Ankylosing Spondylitis is an auto-immune, inflammatory form of arthritis. It starts in the sacroiliac joints to begin with in most cases. Then it progresses into the spine. It is characterized by sleepless nights from pain from lying down so long. There is extreme stiffness and pain in the morning that mostly works itself out within 2 hours or so. It can also be accompanied by enthesitis which is inflammation of the point where muscles and tendons meet bones like in your heel, ankles, knees, hips etc. It is also sometimes accompanied by iritis or uveitis which is inflammation in the eye, psoriasis and irritable bowel disease sometimes even chron's disease. It can eventually progress to a fusing of the spine.
So back to the 5 stages of grief. With the first diagnosis I hit Denial first, swept past the next two into Depression and then stopped back at Bargaining, maybe if I try this or that, or this diet change, then I backtracked further into Denial again and lived that way for a few years. I went straight to Depression this time around with a side of Acceptance and what I can only call Relief.
I say relief because it explains why I can't sleep at night and why I need to get up after four hours of lying down, sit up on the computer with a magic bag on my back until I get loosened up enough to lie down again.
It's why I crawl out of bed sometimes on my hands and knees in the morning and can barely lift my son to get his diaper changed.
It's why if I don't have a hot shower in the morning to help loosen my back my day is not quite the same.
It's why I get tired so quickly and sore so quickly.
It's why I let my parents, 30 years to my senior, lift the heavy things, do the heavy work, still take care of me at nearly 29 years old.
It's why sometimes I wake up and my ankle will be hurting so badly with no explanation. Or my knee or my hip, or my heel, or my wrist, etc.
It's why randomly I need a cane for a few weeks every few years.
It's why no amount of diet change or elimination of food groups eliminates my pain
So all in all I am not writing this in search of pity. I guess what I'm looking for is understanding and non-judgement, likely mostly from myself. Having a diagnosis at least makes me feel less misplaced or weird or at least have an explanation for friends and family for why I am not a typical healthy young woman.
So what I've decided is I accept the diagnosis, my body is working against me in this lifetime but it's still my choice how to deal with it. I am unsure of what course of action I will take after I'm done having my family and breastfeeding. The drugs suggested for me next called Biologics scare me pretty good and I have had my hate on for the medical system for so long. I am not discounting anything though. After seeing two of my husband's aunts recently both fighting for their lives, sisters only a year apart in age, one a chronic smoker and abuser of her body given the chance to turn her life around but continued to live it stubbornly, while the other healthy and happy given a diagnosis of ALS in May fighting, fighting hard with such dignity, grace, peace and happiness I feel inspired. I will not be stubborn in my life choices and miss out on my life. Whatever I decide is right for me I will go with it and give it my all. I am open to changing what I think is right for me at any time. Whether that is abstaining from prescription drugs and relying solely on exercise, or trying meditation or going into trials of biologics, it's my body and my choice.
RIP Auntie Gloria, may you be at peace and find eternal joy.
